I normally love the individuality and uniqueness that make up the human form but in the case of medicine I wish we were all the same or at least similar.
I always read reviews about books, hotels, restaurants before I book and they usually are a good indication of what you get. It’s a shame it can’t be like that with medical treatment!
It would be great to only have a few medical treatments for our condition that you could compare with others easily.
I have now added Arava to MTX and I am getting terrible stomach pains. Googling Arava for side effects and arava stories was quite disturbing although I did find some that taking Arava was the solution to all their problems.
I realize now that learning about experiences with medication is, whilst interesting, not very helpful. Everyone is so different…and there are so many possibilities.
So support yes, understanding yes, but learning from others about medicine, no.
Would be awesome if they had one pill to fix PsA for everyone… but I do think it’s a lot like hotel reviews though… it’s just easier to see the amounts of good and bad reviews there… with drugs you get a list of the worst reviews and a list of the best… and the best just say “worked great, I can walk” and the worst say a lot of different things so the list is much longer… you just can’t see if it’s just 10 of 5000 reviews or if it’s 200 of 250 reviews…
For hotels I always read the bad reviews there’s a big difference between cockroaches and holes in curtains… haha
I get what your saying about how it doesn’t matter though… (I’ve been to a hotel where I found a lot of cockroaches in reviews but never saw one myself)
I have to choose between 3 drugs right now and I have no clue how to do it…
Yes Cynthia but I haven’t been involved in this for very long and all I can see are mostly bad reviews for everything (when it comes to DMARDs). Biologics get a better rating but I’m not there yet!
why do you have to change your treatment? I was hoping that if I do discover the right one - it’ll be for the rest of my life. I’m a one treatment girl and I can be very loyal to the right one!
I spend about 10 years (pretty much) on 1 treatment… but either it stopped working or my PsA got worse… right now I’m not on any drugs… they send me to a specialist to see what he would suggest since I already tried everything they had to offer :)… I’ll have to choose before next week and then I’ll start that one…
PsA does appear change so the treatments change too. And it appears if you’ve first been on x or y drug that might influence what next works. I believe that’s one of the reasons you 'work up the biologics. And it seems everyone’s reactions to the various drugs are different even just slightly. Everyone’s tolerance level of either the disease or the drugs is different too. Feeling just ‘awful’ is always relative isn’t it? What makes me just sit in the corner and cry mightn’t make you do the same. And what makes you sit in the corner and cry mightn’t make me do so. Over the last year I’ve seen my reactions have changed too. What was just pants a year ago isn’t anymore. It’s far more tolerable now and I’m far less just terrified now too.
I was pretty terrified initially at this level of impreciseness, vagueness and just ‘don’t know -ness’. Reading up on all the medical articles where the medics were arguing with eachother which way was right. Delve a little deeper and you find one lot did the research one way which has flaws and the other lot did it another which also has flaws so you sit there and say does anyone know the ‘right’ way?
I don’t think they do. And I think now for many good reasons most of them agree the standard protocol is a sensible way forward, That DMARDS first playing with the mix of them, then biologics and the anti-TNF (or whatever they’re called). I do know there are seriously talented research scientists out there who are working their butts off to come up with better drugs for this and many other diseases. We all know about the funding issues (whether via insurers or a country’s state system) though and the fact that pharmaceutical companies need to make a profit too.
It’s such an utter maze isn’t it? Not just for us patients but for those treating us. I’m only just about to start proper DMARD treatment. For now my thoughts are to start with those (if I have a choice) that appear to have the least side effects or the side effects that will bother me less. And sadly be braver than I want to be and just concentrate on the goal of better capacity in all ways and hopefully making this disease behave better.
Hi yael. I take your point about the differences in how we respond to meds. But there are often trends discernible in discussion as well as well-recognised and fairly common side effects specific to certain drugs. And with Arava digestive problems are up there, I think, unfortunately.
Have you tried hitting the magnifying glass symbol for past discussions on Arava (Leflunomide)? I looked just long enough to see that there are quite a few. At a guess I’d expect to see people complaining of actual stomach upsets as opposed to the nausea that Mtx sometimes causes. I found that Arava made me lose a lot of weight very quickly and others have said the same. Again, I think that’s very much an Arava thing which is far less common with other DMARDs.
I think most of us can reasonably expect to find a drug or drugs which we can tolerate and which works for us. LOL, maybe my brain’s better at identifying patterns than at making sense of the detail, but yep, I think that’s a common thread at least.
I can give Mtx a good press, it’s been my pal for years. And according to the book we sometimes recommend here ‘Psoriatic Arthritis - the facts’ by Gladman & Chandra from the Toronto Clinic, Mtx continues to be used worldwide primarily because so many patients report that it makes them feel better. Actually that’s a good book for checking out drugs as well as many, many other things.
Sometimes initial side effects pass … hoping that’s the case for you. Or perhaps if you ‘fail’ Arava that will smooth your path towards biologics.
Not necessarily… Way back when I learned a lot about MTX from others here. When my Doc said it was time, I was prepared. I immediatly said I wanted injections not pills, I measured my fluid intake from day one, I learned how to space my Folic acid, and importantly learned how to schedule my shots to have the least impact on my life style as well as my wine drinking (or single malt as the case may be.) Putting all those things together MTX has been a non-event for me, beisdes being a very effective med.
Depends on what you are hearing from others. While a commiserate with those who have “negative reviews” I usually blow them off pretty quickly. Some folks just plain bitch no matter what. We once had a whole thread about how much a certain shot “hurt” ARE YOU FREAKING KIDDING ME??? Once every 2 weeks with an insulin needle and only 40mg of medication? Thinking of the 5 year old taking insulin 6 - 12 time a day not to mention how many finger jabs to check Blood sugar. If that shot is THAT big of problem, then I don’t think PsA is the big issue here. Trouble is I said so…
Anyway there are just about 640 COMMON med combinations/dosages (not to mention the uncommon ones) to treat PsA. How does a doc decide? Experience. ITS NOT research. Now either you benefit from experience or you add to it. EXPERIENCE is power. Better its someone elses than yours.
Another point regarding “reports” on drugs is that people who have had good results from a drug are more likely to say “cool” and move on. It’s the people who’ve had bad experiences that are probably more likely to broadcast how bloody awful it all was.
I tend to agree with you, Yael, that listening to what others say about the negative side effects of meds isn’t going to be particularly in your making progress. You have to try it with an open mind, and go from there.
That said, I too have learned a lot about medications from being here and listening to others’ experiences.
I can hurt myself a LOT (seriously) but the shot I couldn’t do… it’s not about the pain… not understanding something is fine but I take offence to this…
Ok fellow sufferers - really great to hear what you think and make me think.
I must admit I’ve only had a quick glance at posts here and on other sites about Arava and other meds and I think you’re right, the bad reviews are out there because those are the people who need to vent and quite rightly so.
Cythina and Poo - you have given me important information that I didn’t know: the disease changes our reactions change so the drugs have to change. I thought and hoped that I’d find the right one and that’ll be it. Coming to terms that this is an on -going journey.
Encouraging positives: initial side effects pass and weight loss (wouldn’t mind loosing a few kilos)
By the way Arava its the name of the desert area in Israel near the Dead Sea. So on bad days it conjures up for me desolation and general fed -upness but on good days it is means hope and innovation due to the wonderful work done there on irrigation and growth.
Going back to the meds and reviews…it does seem (again from very un-thorough research) that biologics are the best for most people. So why not give them in the first place? Is it only because of cost? Taking that out of the equation is there a medical reason? I hear that the other reason is immune system but the DMARDs also effect the immune system, no?
I had many of those questions a year ago yael. Especially concerning if biologics are so good then let’s go there first. tntlamb might be able to answer better than me too. But I think it’s because they start off helping people considerably and for many years too. They are cheap in the big scheme of things and their long term effects are well known about since they’ve been around for so many years. And as Sceenie says - when the treatment works, people tend to just get on with their lives instead of talking about it too much.
It appears to me in the USA you get offered biologics much quicker than anywhere else. In the UK you simply just have to plod the DMARD route. But the thing is that for many they stick on the DMARD because it does work for them. So it’s a win win - for the patient 'cos they feel better and for the NHS because it’s cheap.
And since we all have an auto immune disease, virtually all the drugs used to treat it are affecting our immune system in one way or another. They’re either modifying how the disease wants to travel or modifying how our bodies are treating the ‘threat’ or both. Or even that both are the same thing since it’s our bodies that have decided to attack ourselves!
When I was having stomach problems from Arava my doctor lowered the dose for a month or so, and then we went back up to the higher dose. Just like that, no more problems. Sometimes there’s ways to manage the side effects, but you have to reach out to your doctor about it.
Lamb is right–it’s the doc’s experience, at least it is in my doc’s case. Once he saw that both my husband and I will research (I’m a criminal defense lawyer; he’s a disability determiner with the Social Security Administration–doing research and asking questions is part of who we are) and ask questions, he’s been happy to share his experience. When I go back later this month, I want to ask about the IL-17 (I think) drugs which are beginning to appear.
I know, from talking to my doc, that he prefers not to start his PsA patients on NSAIDs but to go to Methotrexate. I haven’t asked him, but my research and reading here tells me that’s because early, aggressive treatment is the way to go.
When I was diagnosed, he put me on Methotrexate. Even with injections, in over a year, I never got rid of the GI side effects. I put up with it because I improved and did so even more with combining MTX and Humira (for about six months in 2013).
Once we got me off MTX (in November or so of 2013) and injecting Humira only every 10 days, we found my holy grail and what gave me my life back. We were talking about it recently and he said that if every 10 days begins not to work or not to work as well, we’ll move to every 7 days. My regimen came about because his experience told him it works for some people. My perhaps future regimen is because his experience tells him that may be a way to go.
My doc also finds in his practice, generally, folks who have RA do better on Enbrel. Folks who have PsA, like I do, do better on Humira.
As for “the cost of doing business” (I’m listening to Don Henley this morning), every now and again, I hit a small blood vessel or vein and end up with a honking bruise for several days. Got one on the left side of my abdomen right now. Every now and again, the med stings for maybe 5 seconds. I’m having a bit of injection site reaction–we’ll discuss that when I see him later this month. All of that is so minor when I compare it to where I was before September 7, 2012, the day I began treatment.
What makes you think I don’t understand the reluctance to self inject? That doesn’t mean that issue isn’t a big one especially if it prevents one from effective treatment. That’s a far cry though from what I was referring to which was a small group firmly ensconced on the pity pot because the shots “hurt”…
With my first rheumatologist I found I was educating him a bit too much. It made me lose faith or just believe he wasn’t that interested in psa, especially I was then utterly overwhelmed I’d got this too. He couldn’t understand my horror which didn’t endear me to him! Like you sixcatlawyer, I’m a lawyer too, (or was, now I’m an ombudsman, so abit like a judge who can make binding decisions on consumer complaints about providers of financial products to include medical insurance) so research and asking questions to gain comprehension is essential for me. Discussing it so I learn more is even more essential. Understanding current thoughts, knowing how those thoughts are being tested too is essential. Knowing where the research is going, who’s doing what and why, is also essential for me. Who is getting funding for interesting research or clinical trials and why? Most of my legal work has been medico-legal too as in does this illness stop a person being able to do their job? Income protection policies and critical illness policies stuff for the main part. So I’m used to coming across all sorts of medical conditions, learning about them and applying that.
My new rheumatologist ‘got’ me in the first appointment and was so happy to explain so much better. It was such a relief. But she’s still nevertheless constrained by the NHS. I saw her on 24 March. Got her letter saying what I should take on 7 April. She was away on holiday for two weeks over Easter (perfectly acceptable) so she got my response on 18 April saying yes please and can I have the prescription and all the paperwork for blood tests and x-rays before I start as that takes time too? I haven’t got any of it yet, not that I wanted to start it until mid May anyway solely due to going on holiday where I’m on a boat going up and down rivers. Not the best place to learn how to inject myself, not drink alcohol at least initially (hard for me too as I love my wine and boy do I need some on the boat as mooring is a challenge for us, great fun for other people watching us, but boy do I reliesh that celebratory glass after we’ve finally managed it) and deal with potential side effects. But I did think I could get all the necessary base blood tests and x rays set up and before I went so I could start on my return.
Not a hope! Not her fault though and certainly not mine. So I’m presently in a nice capacitating ‘steroid bubble’ where I can do virtually anything I want but so mindful I could break through it any time, (or get roid rage, like my mother did for COPD - that was some show I can tell you) and so mindful calcium is presently leaching out of my bones. I don’t take to drinking milk etc (although cheese is fine) or taking calcium supplements very well. They don’t like me much.
So finally this woman wants injectible mxt and shedloads of folic acid and she’s still waiting. Given the fuss I made about it all last year, it probably serves me right though. LOL.
Laughing too much now! Does it store well??? You haven’t seen my garden shed though have you? Given for much the last year I’ve been in too much pain, the ol’ garden shed needs a something of a makeover. Still though the field mice like I don’t go in there that much anymore. So at least some beings are happy:grinning:
and I can be very loyal to the right one!
Coming to terms that this is an on -going journey.
